Where do I start? When my Mom was 90, she fell in her apartment during the night. She was taken to the local hospital and was treated for a weak leg. I had constantly asked if they scanned her head and was told no. She was placed in rehab for her leg and at the time I was living in NY and she was in northern VT. I called her at the rehab, and she was babbling so, I then called the nurses station, and she was rushed to the local hospital and was then transferred to UVM Medical Center where brain surgery was performed for a brain bleed. Come to find out, there were two prior brain bleeds that I wasn’t aware of, she had never even mentioned hitting her head. She could no longer return to her apartment but had to reside in assisted living. She thrived and functioned quite well and actually loved the activities. I was able to find a job and moved to be near her in August 2017. She passed 4 months later on December 23rd, 2017. I was planning for her funeral to be in May 2018. During that time, I was planning to have my Dads ashes buried with her in Stowe VT where most of her family were buried. Unbeknownst to her, I purchased a plot for her and Dad. I was preparing for the inevitable.
Now my turn to tell my story. July 22nd, 2018 was the day that changed my life. Let me add that I have been a Service Coordinator for a brain injury program in NY for quite a few years and continued that path with another agency when I relocated to VT in September 2017. On July 16th, 2017 I went to work with a headache on my forehead. It was July and quite hot plus my phone was ringing constantly, emails to answer, there were meetings to attend and emergencies were fairly common. I was busy. The headache continued on my forehead for the rest of the week. Was it a migraine (which I get), Maybe a sinus headache or was it just plain old stress? Remember I also advocated for my Mom and she was moved up to the full care of the nursing home 2 weeks after I moved to VT. I didn’t have time for myself or my week-long headache. On that Friday, the headache moved to the right side of my head. I wanted to go home, and I felt grumpy, which surprised my office mate. On Saturday morning I awoke to a banger of a headache and I spent the day on the couch with my migraine meds and a cold pack. During the early morning hours of July 22nd, 2018, I threw up. I waited until it got light out and I called my cousin that lived nearby and asked for a ride to the local ER. Within a very short time, a scan was done, and an ambulance was called. The doctor came into the room and informed me that I had a thrombosis in my head. I was being shipped off to UVM ASAP!! Having flashbacks of my Moms journey, I panicked. I looked at him and my cousin and I informed them that I needed to be medicated or I was leaving. The doctor then appeared with two tiny white pills. I was transported quickly with the EMTs notifying the ER our time frame and to have neurology waiting. As we pulled into the ER, I was rushed in and assessed. Lines and machines were attached, and I was taken to the Neurology Dept. I was receiving blood thinner and lots of tests, constantly checking my cognitive reactions. So far so good, I guess, I don’t think I had a stroke. The next day, July 23rd, 2018 at the UVM Medical Center, the sun came up and I had gotten no sleep. My nurses and neurology team have been testing me throughout the night. I was still “doing well,” no stroke. Meanwhile, my sons were calling me, and we were trying to figure out how to handle all this. They were not even in the same state as me. I was keeping my cousin posted, so I was alone. 4 neurologists and 6 or 7 students walked in and the room was crowded. One neurologist spoke up and informed me that I had DVST, a rare blood clot that they have only seen two of in 10 years! Great!! “So-how big is this clot?” I asked. The neurologist informed me that the clot was 5 inches long. The room was silent. So, I figured that I needed to say something- “Holy shit. I have a snake in my head.” Needless to say, no one spoke. This is serious, I concluded. Throughout the day on July 24th, 2018, I was watched closely and brought downstairs for all sorts of tests, scans and blood work. Then a nurse came in and informed me that I will need to learn how to give myself injections of blood thinner when I was to leave, which was the next day!!!! What?? Really? It took me 11 hours to be able to do that. I was discharged July 26th, 2018 to my son that came from MA. I continued to give myself shots while being weaned off to another blood thinner and 2 to 3 visits a week to my primary care to monitor my INR numbers, which was all over the place. The rest of this whole adventure was advocating for myself with a very supportive primary care doctor. I went through 3 neurologists over the next year. One being at Mass General. I needed a second opinion.
I did begin with a hematologist in VT that has been the best thing since sliced bread. I am now on a medication that does not need my INR numbers checked. I spent the better of 2 years in and out of doctor’s offices and hospitals looking for an answer. Guess what? There aren’t any answers, only speculations. One thing that was for sure, brain swelling takes up to a year to heal, and having a medical issue that only 3-4 people out of a million have, is something I am still dealing with. I have seen a neuropsychic counselor and now a counselor to just sort out issues that I’ve struggled with. It hasn’t been three years yet. I’ve had to keep up with scans and tests and I did struggle with this. You have to be aware of how you feel and don’t downplay it because you’re tired of the whole ordeal that has turned your life upside down. Thanks to my skills from my career of choice, I knew the ins and outs of navigating the healthcare system. What I wasn’t ready for was the physical and mental side effects that interfered with self-advocating. My support system, my family and my sons have been there for me. My team of doctors that I finally felt confident with have been superior. There is a very overused phrase that I’ve always disliked but pretty much sums it up- “It is what it is.” I really am very lucky it could have gone very differently. In May of 2020 I got clearance that the Snake in my Head was gone. My mental health and everyday living have been impacted. I am no longer working but, the funny thing is, is that I kept telling my director at the agency I was with that I’ll be back. I started that conversation a month after my incident. My personality is to deal with things and keep going. Little did I know that this was bigger than I wanted to accept.
I recently wrote my story as a survivor of a brain injury. This is part two. What I left out was that I went on a vacation that I had planned for long before my brain injury. My BI occurred on 7/22/2018. I had plans to go to Cape Cod on July 28, 2018. Yes, several days after my hospital discharge. I’m sure the big question was “What are you thinking?” and “Who approved this?” First of all, I was a Service Coordinator for a TBI Program for years, so I am aware of BIs and the problems that may arise. I am also a strong advocate for promoting independence. Of course this doesn’t make me a smart person. Haha! It just makes me an informed person. Since I am an independent “I can do this” type of person, I thought-Why not? Let the planning begin! I spoke extensively with my doctor and she felt that I needed to do this and she supported me with guidelines that I was to follow. I was so anxious to get back to normal, so to speak, and I was going to follow the directions to a T. I also had my own ideas to add since this is what I do for a living. I help guide people through the system of challenges that they will be facing.
My doctor contacted the local hospital I would be near for a week. I would go 3 times a week, and more if needed, to get my INR numbers checked. If you could have only seen what my arms looked like from all the bruising and lines that had been attached to me, what were a few more abrasions? My list of requirements were being checked off. At the same time, I would continue my injections of blood thinner on my own. I went about packing my medications, my needles and alcohol pads. I had a list. An extensive list that was going to get me where I needed to go.
Upon leaving for the 5 hour drive, I notified a couple of friends and family of my plans and that I would keep them posted. I attached an index card to my car’s dashboard with emergency numbers. I also planned to stop every hour to get out of my car and walk around. Or I should say, at my doctors request I was going to stop every hour. That’s class 101 of what to do when you have a clot. Needless to say, I was not only excited to get out of dodge, but I was a little nervous too. I am not a newbie to traveling alone. I do it frequently. The only thing is, is that I’m traveling only several days out from being discharged with a rare blood clot in my head. Was it risky? Yes, but so is living alone. I had no intention of changing MY life, or so I thought. The ride was long but I was so excited to “run away.” Let me add, my son worked about 1 ½ hrs away and my cousin’s sons were in the next town. I was staying in her cottage for a few days and then moved onto a B&B on the ocean for the remainder of the trip.
This is what I didn’t plan on. The exhaustion. The physical exhaustion of the trip and just the mental exhaustion from the anxiety of my new friend in my head ( who I referred to as the snake in my head. All 5” of it.) that had caused a major upheaval in my life. Here’s the good news, no one knew but me. I felt like I was in the witness protection program. Haha! Now remember, I was carrying around index cards that had emergency numbers on them and people knew. I wasn’t totally on the lamb.
In the next few days I went food shopping, ordered take out and sat in restaurants. I was looking for the perfect lobster roll. I met lots of people, because I’m a bit of an extrovert, and took naps. I sat on beaches, picked up shells, chased away some curious seagulls, took pictures, shopped and went to an outdoor concert. Did I mention that I took naps? Yes, I did. Quite a few. One thing I knew I was struggling with was concentration. I couldn’t read two pages of a book without losing that concentration that it takes to remember what the story was about. I continued to go to the hospital on schedule and my medications were adjusted with the ongoing fluctuation of my INR numbers.
In the evenings, I would sit and watch the ocean, the spectacular sunsets, the fishing boats coming in with their daily catch, and people enjoying a stroll before settling in for the night. I was also thinking how huge the world is and how each one of us may be carrying an incredible load on our shoulders. We are making the best of it and continuing on. Any one of the people I saw may be going through something, as I was, but they were living in the moment. I believe the word is being mindful. Distraction can also be our friend.
What did I learn from all of this? I learned that I can adapt and still be independent. I learned that I can ask for help, which is something I’m not very good at. Ask anyone in the social service field and they will tell you that they will help anyone that needs us, but we are not very good at asking for help. I have learned that there is also a grieving process that resembles a roller coaster.
Grieving isn’t always about death. One feels a loss or that something has been taken away without my permission. Some days I would experience a euphoric feeling and I can do anything! I even marveled that I was alive! For example, take a trip by yourself a few days after being discharged from a hospital. Other days I could just lay on the couch and count the hours until I can go to bed and hopefully have a better day tomorrow. I learned that this is my ship to sail. I have a crew to support my decisions. I have a team to give me advice. I have caring and loving people to help guide me when the chips are down but to also celebrate with me when the news is good.
Sometimes things do happen for a reason that we may not be able to figure out but I will say, it shows us that we can adjust our sails. Maybe not always in the right direction, but at least to try.